It is Florida’s dry season

There is a joke about Florida’s seasons. Florida has 2: a wet season and a dry season. The wet season runs from April-October, and the dry season runs from November-March. They are just that. It rains every day during the wet season and not at all during the dry season.

So imagine our surprise when God winked and threw us a couple rainbows and some rain in the last several days.

Sunday morning, as I woke next to Caitlin, on the make-shift bed we had relocated downstairs, I knew the day was going to be different. Although she begged for me to take her to church, I knew we would not get there and that she was failing us. 

I will not weigh this post down with details and specifics, because death is not beautiful or glamorous as some have described it. I will tell you the beautiful part of this story however.

We held Caitlin in our arms, while family gathered around, and at 3:24 on Sunday afternoon Caitlin took one last breath and died. 

We cried some more, and said goodbye. And then, as if God rolled out the carpet for her to travel to heaven, a rainbow appeared. That means, moments after  each of her family members said goodbye it rained (for only a few minutes) AND produced a rainbow….in my heart I want to believe Caitlin took the hand of loved ones, and unafraid, she skipped up that rainbow and right into heaven with only one look back to wave and say, “It’s ok mama! I promise I’m not scared! I can skip again!”

Again, without details of the day, I will fast forward to several hours later. We let go of the shell that had once contained Caitlin’s incredible spirit. We kissed those uncharacteristeric chubby cheeks, and the no-longer crooked and droopy mouth, and we placed her body into the care of the funeral home.

As they drove away I started thru the house and out the back door to retrieve the other children from a friend’s house. As I got half way thru the backyard, the sky opened up, and it rained. I stood in the rain with a friend who was walking with me. Honestly, I think we were both paralyzed with shock. Turning our heads toward the sky in stunned silence, we put up our hands and shrugged our shoulders because words weren’t necessary. As our feet hit the back porch of our other friend’s house just a few yards away, the rain stopped.

We gathered children and sent them running thru the backyard for some dinner. Again as we reached the halfway mark in the joined backyards, it rained. It rained harder and harder until we reached the door of my back porch. It rained for 3 minutes and was done. Another wink? How can it be anything but a wink.

Then, finally, after a day of being surrounded by family and friends, and Jeff and I dealt with the tasks of funeral home and church service arrangements, we arrived home yesterday afternoon. We were greeted with a dozen excited and shouting adults and children. Apparently, while we were out “arranging”, at exactly 3:24, a rainbow, ever so faint and light, appeared in the backyard of our home. 

God let Caitlin throw her own rainbow. She loved them so much. She thought they were beautiful. And in the last year, when everyone joined in and made it “hers” to own as a symbol of things so much bigger than she could ever know, she was thrilled.

So I’m going to believe, that God picked her up, and said, “Let’s send a message to  mommy, daddy, and everyone left down on Earth crying for you. How could we let them know that you’re ok?” It wouldn’t take Caitlin long to reply, “Mama loves rainbows!” And with that, God held her hand, and together they threw a rainbow; a tiny, fading, almost invisible rainbow. 

Rainbows and rain, during the “dry” season…..best.wink.yet.

with love from our broken hearts, d


We have made arrangements to have a celebration for Caitlin’s life.


Thursday November 15th we will have a visitation from 6-8pm.

Friday November 16th we will have a service at noon to celebrate Caitlin’s life, and all that it has meant. Following this service, we will have a reception (at the Live Oak Reserve Clubhouse). We gently (and respectfully) request that no black or navy blue be worn to her services. Caitlin was bright and loved her colors. So we ask that you choose to wear a color that our princess would have approved of.

Both events will take place at our church,

St. Luke’s Lutheran Church

2021 West State Road 426

Oviedo, Florida 32765

407.365.3408

In our efforts to continue the battle against a horrible disease, we made preparations and donated Caitlin’s brain and spinal column to be used in Dr. Mark’s fight.

We have asked that in leiu of flowers, a donation be made to Caitlin’s treasured and beloved Dr. Mark and his continued efforts and research to find a cure for DIPG. 

Checks can be made payable to: WCMC Department of Neurological Surgery

Mailed to: Dr. Mark Souweidane c/o Ms Ana Ignat

520 East 70th Street Box 99

New York, NY 10068

Dr. Mark has asked that if this is something you choose to participate in, that you please remember to note “In memory of Caitlin Downing” in the memo section of check. It is important to him, as I know that he loved our daughter too, and any donation made in Caitlin’s name is of significant meaning to him.


And finally, with fresh new tears, I ask you add a special little boy and his family to your prayers today. I have engaged with only a few families who find themselves in the same situation we have; fighting this nasty disease. One of the families that has held my heart  tightly is Evan’s family (aka the CREW). It was a chance elevator meeting, that resulted in a connection made months later, and friendship formed. This morning Aimee and Tim had to say goodbye to Evan as he died. While I know their heartache and share their pain today, Aimee offered me some incredible words of comfort. You see, Evan and Caitlin are each one of many siblings. “Now Evan has a sister to hold his hand, and Caitlin has a brother, in heaven.” Aimee, I think they will play together in heaven, with each other and others who have died before them. They will finally be healed, and once again they will be able to skip and run, and jump and dance. So you know, Caitlin would have met him, held out her hand, and told him everything would be ok. He probably wouldn’t have needed the reassurance, because he was always up for an adventure, but her soothing ways would surface anyway. My love to you today, and every day from now until forever, because I know you will hurt that long too.


']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })();